CHfather

Welcome Nicolas (and your English is excellent!). I'm glad you are getting good relief. I can't answer your question anout the ringing in your ears, but I wanted you to know about this method for using less sumatriptan with each injection: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ You might reduce the time it takes to stop an attack with oxygen if you drink an "energy shot" (such as 5-Hour Energy) or "energy drink" (such as Red Bull) or even just a strong cup of coffee just before you start using the oxygen. Also, this mask helps many stop their attacks more quickly: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit Maybe someone from Europe can say whether it is available there. Best wishes for continued success.

THANK YOU for continuing to let us know, and SO HAPPY for what you are experiencing. You so deserve it!

Just sent you Batch's email address.. Someone once explained the 5-day detox from trex, but I'm not remembering well enough to recap it. It's been an article of faith here since the beginning, based on the experiences and knowledge of the busting pioneers. And folks that I have seen here who have tried busting without detoxing have not had good results. (On the other hand, verapamil was once considered a blocker of busting, but now it turns out it isn't, at least at relatively low levels.) Lithium has worked well for some folks. You have to get monitored pretty frequently, and I have read that the rebounds after stopping it can be pretty severe. I was just reading a new study of occipital nerve blocks in 110 people with CH that reports substantial reduction in attack frequency. I have to admit that most reports I've seen here and elsewhere about ONBs have been disappointing. Maybe they have a better method now. Not to be too discouraging, because an ONB might definitely be a reasonable thing for you to try, but in general it seems that medical studies of CH medications show better results than people get in the real world.

Well, I'm kind out of of gas. At the risk of just being pushy, I would recommend trying the D3 again -- it works for so many people. I know that if you want to try it again, you can ask Batch for advice. He's the person who developed the D3 thing and has been watching over it with great attention over the years. He's pretty much convinced that he can get it to work for anyone. He's a great guy who is very responsive to requests for assistance--he really likes to help. If you want to give it another go, I'll be happy to PM you Batch's email address. The CH expert Peter Goadsby says that 960 mg/day is maximum dose for verap, but it's important to go up slowly and monitor the heart. You didn't say anything about splitting your trex injections (assuming they're injections), although maybe that's also covered under "tried all of those." Maybe busting is the route for you to go. I didn't mention that before only because you'd have to stop using the trex for 5 days before busting and during the time that you're busting, which could mean at least 15 days of no trex while still having attacks (of course, you might be among the lucky ones who can knock out a cycle with one dose, but you pretty much have to count on three). It didn't sound like you are really ready for that. Of course, there are plenty of other meds that work for some people: prednisone, lithium, gabapentin, topamax. Somehow I imagine that you might have tried some or all of them already. Wish I could be more helpful. I'm hoping someone else will be.

Do you have a good O2 setup: high flow rate, good quality mask? If so, are you staying on the O2 for 5-10 minutes after you've killed the attack? That tends to keep them from coming back. Unfortunately, use of triptans, and of course particularly overuse, has been shown to cause rebound headaches, make attacks more severe, and extend cycles (not to mention potentially killing you). If you're injecting, you NEED to know this: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Strongly suggest starting the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ 360 is a relatively low dose of verapamil, if your doc says your heart can handle more, Tried melatonin at night (starting at 6-9 mg and working up)? Tried an energy shot (5-Hour Energy, etc.) at the first sign of an attack? Some people find that putting their feet in a bathtub with water as hot as they can stand helps abort.

I know you want to keep this simple, so I'm just asking . . . . Time of day? Duration of attack? Only MM, or will it be able to accommodate LSA or LSD info? Notes of some kind (for example, effectiveness of O2 or an energy shot/caffeine)? When you have an "option to add the amount" after VitD but not after MM, I just have to wonder whether you're planning to have an amount option there, too. I'm not quite sure what the "amount" info would look like with the "D3 intake" category, since there are a lot of pills in that regimen. If this is something that would be printed out and brought to a doctor (or perhaps, as you say, sent directly to a doctor electronically), will there be an option to removed the MM/LSA/LSD part? Not everyone will want to share this with a doctor.

I think you are correct to doubt that you have CH. (I'm not a doctor.) Your symptoms hardly sound like CH at all, especially the absence of excruciating pain. The only other kinds of chronic headaches that I know of that are one-sided are chronic migraines and hemicrania continua, but you don't describe having some key symptoms of either of those, either. In the short run, you might try some ginger, which helps with the persistent low-grade pain in CH and migraines. Here's some info: >>>A teaspoon of ginger simmered in a cup of water, sweetened to taste, is a pleasant way to hold off the shadows for a couple of hours. Ginger doesnt dissolve well, so simmer the powder or finely chopped ginger root for a while, and keep stirring while you drink. In hot weather, a very strong ginger ale or ginger beer can do the trick enjoyably. Look in health food stores or delis for brands such as Reeds Extra Ginger Brew, Ginger Peoples Ginger Beer, Natural Brew Outrageous Ginger Ale or Blenheim 1903 Hot Ginger Ale. The usual ginger ale used for mixers, such as Schwepps or Canada Dry, is not strong enough. A company called The Ginger People makes strong ginger candy in several varieties (www.gingerpeople.com)<<<. Did your doctor prescribe anything? As I say, it doesn't sound like you have hemicrania continua, but the prescription drug indomethacin is a very effective treatment for it, so you could rule that out (or in) pretty quickly.

MSG is a bad one for a lot of people, for sure. In fact, now that you mention it, one reason I had to stop traveling to Mexico was that (a) there was MSG in a surprising number of things where you wouldn't expect it, and ( if you asked a waiter if there was MSG in a dish, 98% of the time they had no idea what you were asking about. (I agree that there are a whole lot of sneaky names, but I don't think high fructose corn syrup is one of them.) I got severe pancreatitis attacks from MSG (a pretty darn painful condition in its own right), and it took me several years to figure out that MSG was causing it. Most doctors still today wouldn't guess that MSG could cause pancreatitis.

Every once in a while, someone says they quit smoking tobacco and their symptoms improved. Most people don't experience that improvement, and there are lots of non-smokers/never smokers with CH. I think the same is true for pot, but maybe others can comment better on that. A person just recently posted that a serious low histamine diet helped him/hder a lot, and someone else who was trying it also reported good results. https://clusterbusters.org/forums/topic/4446-low-histamine-diet-worked-for-me/?hl=diet Lots of vegetarians with CH; lots of people who eat carefully. Every once in a while someone reports that some kind of strict diet helped. Ayurvedic; elimination; gluten-free . . . there's rarely enough follow-up to know how it turned out over time, or whether others were similarly helped. Type the word "diet" into the search bar on the home page and you can check it out for yourself.

I doubt that the naproxen will help you. You want to know that you can divide your imitrex injections (if it's injections you're using): https://clusterbusters.org/forums/topic/2446-extending-imitrex/ An energy shot (5-Hour Energy sort of thing) or energy drink (RedBull sort of thing) will sometimes abort or at least lessen an attack. If you're willing to do psilocybin mushrooms, read more in the "ClusterBuster Files" section and ask questions. You have to be "detoxed" from Imitrex for 5 days. I suppose you could go the pharma route with verapamil as a possible preventive and oxygen (?) or split-dose trex as your abortives. So, what are the chances of getting oxygen and bringing it with you? One way or another, I'm sure you could get a mask and a regulator, but I have no idea about the availability and/or quality of the actual O2 you could get--and I don't know how you're traveling and how transportable O2 would be. I see that you can rent tanks, regulators, and masks in many major cities/tourist destinations (for example: http://www.handicapped-services.com/oxygen.html).That might be outside your budget. It doesn't appear that you would need a prescription. You don't mention oxygen as something you've previously used, so I'll just tell you that it's the best and safest abortive there is. You could also try the D3 regimen, if you can get what you need. I would imagine that American big-box stores like Costco and Walmart, which I know exist in some places there, will have what you need. The developer of the D3 regimen got all his supplies from Costco, and I see that there's an online costco in Mexico, too: costco.com.mx The regimen is described here: https://clusterbusters.org/forums/topic/1308-d3-regimen/

metcraft: See https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Do you have oxygen??????

Bob, best wishes for a positive outcome for your wife. I hope you are managing to take care of yourself, too.

Welding oxygen? D3: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Seeds: www.tranceplants.net or www.iamshaman.com There have been a couple of folks here who have gotten significant quick pain relief by putting their feet into a bathtub with water as hot as they can stand. And what about energy shots (5-Hour Energy, for example)? They often work pretty well if taken at the first sign. Most people think cold is better for the shots.

Are you sure you can't get that injector open? See the bottom of this page: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Why don't you set up an O2 system using welding O2? What about seeds? Really, no doctor will see you? We called around to walk-in clinics that would take cash and said they would prescribe trex for CH. Brought documentation of CH from previous doc; got trex prescription. Can't you restart the vitamin D3 regimen? Take melatonin at night?

So sorry to read of this really, really tough and sad situation! I feel pretty sure that everyone here can relate to what your wife is going through, and we know how incredibly hard it is to see someone you love going through that pain, let alone considering suicide. Mit''s questions/suggestions are the right place to start trying to help, if only because they might be things your wife hasn't tried -- or maybe not properly tried -- yet. Here's the info about the D3: https://clusterbusters.org/forums/topic/1308-d3-regimen/ In the third paragraph there's a way to send a message to Batch, who developed and refined the D3 regimen. If I were you, I would get in touch with him -- he won't mind, I promise -- and have his help in making sure she's doing this as correctly and effectively as possible. Most people who have "tried" oxygen and found it didn't work are not doing it right. High flow (15 liters per minute at the absolute minimum), good quality non-rebreather mask, and effective breathing technique are essential. It's probably true, I guess, that she must have tried everything, if someone was willing to do two brain surgeries on her when she's had CH for "only" two years. What were her brain surgeries? But lots of people say they have "tried everything," but then it turns out that, for example, the Imitrex they were taking was in pill form, which is completely useless, or as a nasal spray, which is often useless. Was it injections she was taking? Or we find people who haven't tried a steroid taper, or a preventive such as verapamil. It could be that some of the available treatments weren't available to her because of her other medical conditions. Now, we have a member here who, if he's listening, can tell you about rising from the deepest depths, after brain surgeries. He used "magic mushrooms" (mushrooms containing psilocybin) and the difference was amazing. Many people here have treated CH with success using psychedelics, having come here out of desperation, as a "last resort." Marijuana probably won't help her -- makes it worse for a lot of people. If you want to consider mushrooms or other forms of "busting" with psychedelics, you should read the numbered files in the ClusterBuster Files section and then get back to us. (A big challenge with starting the busting treatment is that you have to not be taking a lot of meds, because they interfere with the effects of the psychedelics. See the file "Playing Well Together" over in the ClusterBuster Files section.) It's odd, though obviously not impossible, to be so severely chronic so quickly, and have nothing at all that helps. When oxygen (if she was using it properly), triptans (if they were injectable), energy drinks (downed at the first sign of an attack), and other usually-helpful first-line treatments don't help, you gotta wonder if she has some other condition that looks like CH. Has a hemicrania continua (HC) diagnosis been looked into? Has she tried indomethacin, which treats HC but does nothing for CH (just as CH treatments do practically nothing for HC)?

I hope this works for you, AndiD, and please keep us informed. As you say, not much online. I did see a thread over at clusterheadaches.com, from 2010, where a person with intractable CH felt that Namenda (a brand name for memantine hydrochloride) was helping, but there wasn't any substantive follow-up. PF wishes!

SSRI antidepressants have very mixed history. Some people say they help, many say they make things worse, some say they seem to make things better. Here's a thread that contains them all (you might have to register to see it). http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=sep2003;action=display;num=1062963166 That's a good site for info about CH and meds.

So sorry, defiance. I really feel for your father. He's far from the first CH patient to become difficult when dealing with this awful condition. I had to fight my daughter every step of the way to get her oxygen (she has CH, not me). She even wouldn't try it once I had it set up, until she got desperate one night -- and it changed her life. I will never forget her laughter as the pain washed away. It's terrible, but also not uncommon, to have an uncaring moron for a doctor. You would think he might just look something up, right? Here's a document from the American Headache Society that might help him stop being a cruel jerk: http://www.achenet.org/assets/2/7/GoadsbyCluster.pdf But probably not. There's a list here of recommended doctors: https://clusterbusters.org/cluster-resources/ Maybe you can get him to one of those, or at least to a headache center, where the likelihood of helpful diagnosis and treatment is pretty high.

Jeff', Glad you got the oxygen, and that it's helping! Just to be clear for anyone else reading this, if you go to a welding supply store and ask for medical oxygen, or ask for tanks using medical-oxygen terminology (an "M" tank, on an "E" tank, for example), they are going to send you away. If you go to a welding supply store and purchase oxygen for "welding," there is zero reason for them to turn you away or to ask any questions about why you want it. Also -- I am 99% certain that your doctor is misguided. Some extreme pulmonary conditions might be contraindicated, but beyond that, the general literature shows no contraindications for sensible oxygen use. Since I am not a doctor -- but I am very accustomed to doctors spouting nonsense about CH treatments, particularly oxygen -- I suppose no one should take my word for this -- but no one should be deterred from pursuing oxygen, either. Sorry if I sound cranky. Doctors, who should be the gateway to oxygen, are instead the primary obstacle to getting it, and that just burns me up.

The ER won't help him. If they know what they're doing -- which is unlikely -- they'll give him O2 ot a sumatriptan injection. Otherwise, they are just likely to shoot him up with opioids or other crap that won't help. Yes, he has to take everything on the D3 regimen. What does that mean, "We are going to try some blood pressure pills"? Verapamil, a blood pressure med, is a first-line preventive for CH. Of course, he has to do it daily, under a doctor's supervision. I don't know whether other types of BP meds -- verapamil is a calcium channel blocker -- will work. But verap is not an abortive, it's a preventive, and its effectiveness has nothing to do with his BP going up when he has an attack. I'm kind of mystified. Maybe we've discussed this, but does he have no pharmaceutical meds for his CH? No imitrex, no verapamil . . . lots of other things that might have been prescribed. If not, why in the heck not? And please please please get him the O2!!!!

Can't answer your actual questions, but some things that might help: Batch, the developer of the D3 regimen, has found that during times when pollen counts are high, the D3 will stop working. He says to take 2-3 doses of Benadryl per day, at the standard dosage. Says it got him back to pain-free. Are you splitting your trex doses? Still works, less side effects: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Are you trying caffeine -- energy shot, energy drink, or even strong coffee -- at the first sign of an attack?

You might want to consider printing out this major journal article about oxygen and bringing it with you. http://jama.ama-assn.org/content/302/22/2451.full I can't answer your $ question about O2, but insurance should cover most of the cost of your oxygen, unless you're on Medicare or Medicaid, which do not cover oxygen. I think maybe the VA system also refuses to cover it -- and sometimes people have to fight with their insurance companies to get reimbursement for O2, even if it is covered.

Stay on the O2 for a while after the attack has been aborted, to help prevent later attacks. What's "a while"? You could say 5-10 minutes. We used to say as long as it took to abort the attack. So, you get the idea -- some period that's not brief.

Find a welding supply store near you (use google). Go in and ask for a 60 cubic foot oxygen cylinder. (That's fairly small, but it will get him started and treat several attacks. The larger sizes are hard to lug around, but you could go up to 80 cubic feet or more, or get two 60s, or just start with the one 60 and see how it works out. What you get depends in part on how much of a hassle it is for you to get to a welding supply store for refills.) Do not mention that you want it for medical use. You want it for welding. If you're uncomfortable doing this yourself, maybe you have a more knowledgeable friend who would accompany you, or you can make up a story of some sort, in case they ask, that explains that you are getting this for someone else, you don't know anything about welding, so you're just buying what he told you to get. It's actually pretty unlikely that you'll be asked any questions unless they just feel like chatting with you -- you're just another customer to them and their job is to sell you what you want. At some places, you can buy or rent. I would suggest that buying is more straightforward. There's paperwork associated with renting. It won't be inexpensive to buy -- several hundred dollars, at least. If things don't work out for some reason at the first place you go to (though there's no reason they shouldn't), go to another place. You're not a criminal; you're saving your father's life. I've been told that Tractor Supply, which is a national chain, has tanks. Maybe check the store locator there: http://www.tractorsupply.com/?cm_sp=Header_Nav-_-Links-_-Logo NOTE THAT you want a cylinder/tank that is full. Some places also sell them empty. Ones I've bought at welding supply stores have always been full. You can just ask, after you've bought it, "Do I need to fill this or is already filled?" You will also want (but not completely need) a cart with wheels for the cylinders, or at least a stand to hold them. If getting this makes you uncomfortable, you can skip it for now. I'm going to make this next part simple -- there are other ways to do it. At amazon.com, buy this regulator -- https://www.amazon.com/IMAGE%C2%AE-Welding-Welder-Regulator-Cutting/dp/B00JP9WIF2/ref=sr_1_4?s=hi&ie=UTF8&qid=1466033168&sr=1-4&keywords=welding+regulator-- and this mask -- https://www.amazon.com/Medsource-Adult-Non-Rebreather-Oxygen-Mask/dp/B00BBFQ64M/ref=sr_1_3_s_it?s=hpc&ie=UTF8&qid=1466033238&sr=1-3&keywords=nonrebreather+mask. Use whatever quick delivery options there are that will get these to you at the same time as you get the O2 tank(s). Both of these items are eligible for Prime fast shipping, if you are a Prime member.

[Wrote this before your post above. Some is still relevant.] Niles, I can't really answer many of your questions. 4-5 hours is an unusually long CH attack -- but I can't say it's unheard of. SEE BELOW. Yes, there are people who have some symptoms of CH and some of migraine, or who have both. The lingering dull pain is pretty common (referred to often as "shadows"). Usually it's the amount of caffeine in an energy drink or shot that makes some more or less effective. 5-Hour Energy has more caffeine than RedBull, and the shots are easier to get down. There are many Monster drinks -- some are loaded with caffeine, such as Monster Hitman Sniper, which has 240mg of caffeine in contrast to something like 100mg in a 5-Hour. You could take a look and see how many calories your Monster has. BUT MAINLY, you need other tools. Oxygen, sumatriptan, verapamil, BUSTING, D3 . . . . I don't think you'd have 4 or 5 hour attacks if you had a better arsenal, pharmaceutical and non-pharmaceutical. Read around, particularly in the ClusterBuster Files section of this board.